‘Pain renewed her resolve’

— How my mum tried to die on her own terms

Writer Marianne Brooker reflects on the onset of her mother’s multiple sclerosis , the ‘broad-shouldered, red-eyed’ work of caring – and, after doctors and politicians had failed to help, her mother’s decision to hasten her death

By Marianne Brooker

In the early 1990s, a year or so after I was born, my mum and I swapped my grandparents’ spare room for a council flat on the other side of town. Our new neighbourhood was tucked away in the looming shadow of a Procter & Gamble factory, the air around us thick with soap. I remember the flat being palatial, maybe because I was small or because memory can render pleasure in square metres, expanding the space with the strength of feeling. In a photo taken there when I was four or so, I’m crouched on the patch of grass outside, hair in a ponytail and smiling straight at the camera. Ahead of my time, I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.

Growing up there, I had a small circle of imaginary friends, some of my own making and some borrowed from the world (David Bowie chief among them). Each evening, I’d find two plates laid out for my dinner: one for me and one for Louis-Lou, my favourite made-up friend. My mum would wait for me to finish and go to bed before eating the second, untouched plate herself. I don’t remember this, but she often told the story, proud of her generosity and fortitude. As adults we’d joke: “How hungry are you, and how about Louis-Lou?”

Once, we wrote a letter to ET, another of my imaginary friends. To my surprise, soon after, I found a reply waiting on the doorstep. I’d only just learned how to read and knew instantly that his language of bright pink shapes and symbols wasn’t mine. Curious, we took the letter to our neighbour, the only person we knew with an alien translation machine – or so my mum claimed. I watched as she summoned the message up on its screen, the hard drive gently whirring as it translated the otherworldly Wingdings into words. I lost the letter many years ago and don’t remember what it said, but I still wonder at it: the sheer invention, the shared belief.

Play like this engenders a politics of alliance, not transcending our material conditions (impossible), but transforming them, plate by plate, letter by letter, dream by dream. We carried our determined fantasies into adulthood. Growing older, we welcomed in all that was strange and pushed at the world’s limits, always summoning some secret power.

Marianne Brooker as a child. ‘I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.’

In 2009, when I was 17 and my mum was on the cusp of 40, she started to stumble and slur. Despite her protestations, the GP was sure it was “just vertigo”. One day, she came home from the hospital with an MRI scan in a large brown envelope and a diagnosis: “I reviewed this lady today,” the letter from her neurologist to her GP begins, before adopting an unfamiliar language: “The oligoclonal bands are positive in the CSF and I explained to her that she has the primary progressive form of multiple sclerosis. Naturally this is distressing for her.” Naturally. About 7,000 people are newly diagnosed with MS each year in the UK. About 10% of those are primary progressive: symptoms can be varied but deterioration is persistent, with no remission and – at the time of my mum’s diagnosis – no cure (new treatments are now becoming available).

In the years that followed, my mum felt the sharp edge of disability under austerity and still rose to meet life with more fight, ingenuity and generosity than I can properly grasp. Busying herself with baking cakes to raise money for the MS Society and abseiling from the Forth Bridge, she made a mission of her disease. Her sense of agency and community ran deep. She didn’t just fight for rights but for means: making and supporting friends through online forums; picketing outside her local benefits assessments centre; lobbying members of parliament for greater support.

Her determination to live a good life was only matched by her determination to die a good death. In 2014, we visited our MP in a canteen in Westminster. She met his posturing with rigour, fanning out pages of research across the table and forcing him to confront what life was like for so many disabled and dying people. I watched her describe what her life was becoming – trapped, fearful – and what it would be like for her to die: painful, slow. Outside, her fellow demonstrators rallied on Parliament Square, demanding a change in the law to allow terminally ill people the right to an assisted death. But the laws didn’t change.

Before you can understand how my mum died, you have to understand how she lived. Sick and poor, she made a workshop of herself. When her hair fell out, she learned about wig-making and tracked down cheaper versions of her favourite styles from foreign wholesalers. When her teeth fell out, she learned how to mould dentures from a bright white and pink polymer. She duct-taped her feet to a tricycle so that she could feel the wind in her hair. She made an eye patch from an old bra. Necessity, they say, is the mother of invention. But there’s something else in this mix – a defiant kind of self-love: each act a refusal, each invention a gift. These inventions were a means of survival, in material terms and in more personal, psychological, even spiritual terms; they gave her a sense of vocation, pleasure, creation and repair.

When she couldn’t afford her first electric wheelchair, her friends and I clubbed together to buy one on eBay. One friend made a seat cushion and armrests from a cosmic blue fabric, emblazoned with gold stars. We stuck a transfer to the wheelchair’s old, heavy battery that read powered by witchcraft. I have a photo of her whizzing up the hill by her cottage, a shooting star with her dog trotting beside her, her new wig shining in the evening sun. She couldn’t be contained or curtailed; she was a woman drawn to the DIY and the don’t fuck with me. More than symptom management, she created a pattern for a whole other way of life: world-making against the world; surviving within and against the material conditions of scarcity.

Eventually, denied a livable life and a legal right to die, my mum made a choice within and between the lines of law. A decade after her diagnosis, when she was 49 and I was 26, she decided to stop eating and drinking to end her suffering and her life. This process is referred to as VSED: voluntarily stopping eating and drinking.

I discovered her plan by accident, through something offhand she’d said to a friend. Shocked, I listened and protested, clutching at every straw: more care, better care; more money, more time. There had to be another way. She resisted: her quality of life felt too thin, the pain too intense, the threat of losing the capacity to communicate her wishes too great. I looked for clues, catalysts, the last straw: why now? I’m not proud of my first feelings. Shock gave way to hurt: is such a thing even possible, does our love for each other mean nothing? Disbelief gave way to suspicion: is it that bad, are you that sick? I turned her decision into a mirror: am I that bad? We’d talked often about her wishes, but never about stopping eating and drinking. It felt cruel, unimaginable.

We negotiated a pause, time to think and – I hoped – avoid so stark an ending. I insisted she speak with her MS nurse and her GP. The strange prospect of VSED tore me in two, cleaving my head from my heart. I wanted my mum, for her own sake, to be allowed to die; but I wanted her, for all the world, to never be dead. The first felt abstract, fodder for debating societies and newspaper articles; the second lived in my guts and on the surface of my skin. For my mum, of course, the reverse seemed true. Being dead was no great fear of hers, but being compelled to live was killing her.

Searching online, I learned that although assisted dying is illegal in the UK, voluntarily withdrawing from life-sustaining treatment, food and water is not. Doctors are obliged to support patients in the usual way as new symptoms resulting from dehydration emerge and dying quickens. By this method, no one could intervene to hasten her death and no one could intervene to save her life. VSED might allow her the ritual of dying in a time and place of her choosing, with all its bedside tenderness; we wouldn’t break the law, even if the law did little for us.

My discovery knotted in my chest, I started making arrangements to move back home indefinitely. I had three jobs to extricate myself from and excuses to make. For my favourite of the three, I cycled to a nearby neighbourhood to lead a reading group. That week, we started Maggie Nelson’s The Argonauts. In it, she describes going into labour, interspersing accounts of her experience with passages written by her partner Harry as he cared for his dying mother: birth maps on to death, each year of our lives like a palimpsest. It was the first time I’d read a narrative account of watching one’s mother die. Marking it up to teach, I underlined reminders for myself: “put a pillow under her knees”, tell her “that I loved her so much… you are surrounded in love”. Curious and selfish, I hoped that the book would reveal some great secret to me. Harry’s mother was “sick and broke and terrified”, not unlike my own. She chose her suburban condo in place of a Medicaid facility; “who could blame her?” She wanted to die where she had lived and to be crowded in by her familiar knick-knacks. Books like this enact their own quiet form of assistance; rallying around me like shields, windows and crutches.

I returned home in December, following some shorter weekend visits. Our pause had already stretched into months and I was sure we could stretch it further still. My mum’s cottage was piled with clutter. She lived in a time capsule of 70s melamine, torn lino and frayed net curtains. But she brightened it, filling every room with handmade treasures and trinkets. She expanded to fill each of its nooks and crannies, nurtured a sincere affection for its quirks and didn’t give an inch if anyone dare suggest she move somewhere on the ground floor, somewhere more accessible, more modern. “They’ll have to wheel me out of here,” she’d said for years. Insecure housing had chipped away at her sense of belonging, but this cottage was different; this home became hers, if only in her mind – and that’s no mean feat.

I loved it too: conversations at her dining table, deep into the night; the smell of freshly baked bread in the morning; the flower boxes lining the entrance ramp that a friend had built. The shade is well-known locally, marking buildings that are owned by one wealthy family. Every day, my mum’s green door insisted that her home did not belong to her. Every day, her ramp countered: in spirit, in belief, in every daily ritual of waking up and getting by – this was where she belonged, this house would hold her.

I remember one meal in particular, her almost-last. My mum took the lead, lighting the moment with the slow glow of mutual appreciation. Too often, I’d cooked for rather than with her, an admission that catches in my throat – what a rookie error. This time, I followed her instructions attentively: waiting to be guided by her, letting go of the things I’d do a little differently. We made a vegan quiche with chickpea flour, smoked vegan cheddar, onions, peppers, and what we affectionately called “fanny flakes” – nutritional yeast high in vitamin B12.

Care is broad-shouldered, red-eyed work: labouring against bedsores and cramps, lifting, cleaning, feeding. Like all things, care can break. In 2018, a survey conducted by the trade union Unison found that one in five surveyed care workers weren’t given the time to help their clients to the toilet. A similar number did not have time to prepare food or drinks. Nearly half said that they did not have time to support people “with dignity and compassion”. My mum wasn’t making her choice in a vacuum: there was no world in which she could grow older and sicker without struggle.

Portrait head and shoulders photograph of Marianne Brooker. — Marianne Brooker.

I was surprised to learn that hospices are only funded in part by the NHS – 30-40% in 2023. For years, their statutory income has been cut or frozen. For the rest they are reliant on donations, sponsorship, lotteries, legacies, grant fundraising and, of course, charity shops. Countless hospices advertise “sponsor a nurse” programmes, with small regular donations funding the cost of a shift or a palliative medicine. There’s a strange arithmetic to charity like this: your donation might help one or five or 10 patients in their final days of life. My mum was facing her voluntary death, watched over – in part – by volunteer “night sitters”, nursed by people whose work is funded through voluntary donations. The care we received was faultless (I say we, because I felt cared for too, by these people who listened, without judgment). But it could only alleviate so much.

Our last Christmas was slower and quieter. Pain clamped around her stomach and the lower part of her back or shot through her legs in sharp spasms. I associate that word with shuddering movement, but her spasms weren’t visible in that way. The movement happened below the surface, like an extreme cramp that often brought her to tears.

On Christmas Eve, she lay on the living room floor, making herself incredibly small. I’d seen pain crease and curl in her body before – winces, frowns, sharp inhalations of breath. But I’d not heard it like this, wailing out. I just sat there, my arm across her back. I got as close to this feeling as I could but couldn’t stop it, couldn’t even soften it. She took the heaviest pain relief she could and it knocked her straight out. She woke up the next afternoon, just in time for me to scoop out the fluffy middles of roast potatoes so that she could eat them.

Empathy teaches us that we can feel as one another – one’s own skin shakes, head aches and eyes water. But this attenuated feeling announces a distance between the person in pain and the person feeling its ripple. There’s a space between the person whose pain is intrinsic, from the nerves outwards, and the person whose pain is relational, from the world inwards. I wasn’t gripped by pain in the way that my mum was, but I chose to sit with it, with her. I couldn’t learn her pain from books; I couldn’t catch it from touch. But still it moved me and moved in this way, I could begin to accept her choice.

Pain renewed her resolve. For 20 days, we were suspended in an interval, a middle space between living and dying. At this temporary remove, my mum stopped eating and drinking and I found my way around a new type of work: navigating and advocating; lifting and bathing; checking dosages and picking up prescriptions; paying two lots of rent – hers and mine – as we transformed her home into a hospice. This interval was secret and particular – something between us – but common, too, an exception that exposed a fundamental condition of being a human in the world: we are interdependent, both separate from and reliant upon others.

Complete Article ↪HERE↩!

June 26, 2023June 25, 2023

A good death for a Minnesota woman who championed the right to die with dignity

Gallery: Cheryl Hauser smiles as she looks out the window Friday, Nov. 5, 2021 at her home in Hopkins, Minn. Hauser, who has Alzheimer’s disease, has decided to eventually hasten her death by voluntarily stopping eating and drinking after watching her brother die from it.

By Jennifer Brooks

It’s not the dying I mind, Cheryl Hauser used to say.

It’s the leaving.

She left us this month. On her own terms, in her own time; surrounded by as much love, music and kindness in death as in life.

This is her parting gift to us. A chance to talk about the part of life nobody wants to think about.

The end.

“We would sing to her and rub her feet and her hands,” said Cheryl’s daughter, Wendy Longacre Brown, who chronicled those final days as her terminally ill mother voluntarily stopped eating and drinking to hasten the end.< "You're in it together," said Brown, who has worked for years as a death doula, easing the transition from this life to whatever comes next. “There’s a lot of joy and laughter. But there is sadness.”

Cheryl had loved the life that Alzheimer’s was stealing from her.

“She was everything,” her daughter said. “She was someone who could sing in the grocery store aisle, then have a long conversation out in the parking lot with a total stranger.”

But Cheryl knew what was coming. She lost her brother Bill to Alzheimer’s, years before the disease actually killed him.

When she was diagnosed, she knew how she wanted her story to end. When the time came, she would VSED — voluntarily stop eating and drinking.

“When the day comes when nothing matters anymore, I’ll begin,” she told the Star Tribune in 2021. “My brother died of this disease and it was torture. I don’t want that for me and my family.”

Instead of languishing for years in memory care, she chose to spend her last weeks at home in Minnetonka. Friends visited, musicians serenaded her, and her grandchildren pressed her thumb into soft clay to create keepsakes. She sat outside in the sun, surrounded by summer flowers and birdsong.

One of Cheryl’s daughters is a birth doula. The other a death doula. Welcoming us into the world and helping us say goodbye.

“The more that death is part of the conversation and less of a taboo, the more we as a community can be present for one of the two most significant moments in your life,” Brown said. “It’s never too early to start a conversation of what people wish for around their end of life.”

Brown had helped other families through the goodbyes that nobody wants and everyone needs. Now she was the one saying goodbye. Every day, she shared photos and updates on her mother’s condition on cherylhauser.com.

The site started as a way to share news with family and friends. But it also drew strangers, who grieved with them and marveled at their generosity. In a culture that shies away from talk of death, here was a family showing us what dying looks like. Or what dying could look like.

“People often ask, did she have doubts? I can honestly say she did not,” said her husband, David McNally.

VSED is not a swift or simple death and patients in cognitive decline need special care to ensure that they are capable of giving informed consent. But this had always been Cheryl’s plan.

There were moments, as Cheryl was dying, when she would become confused and forget. Her family would sing to her, massage her legs as they cramped from dehydration, and offer her a tiny spritz of water or a cold spoon to hold in her mouth for comfort.

VSED cases are overseen by doctors and hospice staff. Caregivers were with Cheryl to make sure she was comfortable and had medicine to ease any pain or anxiety.

It was a death only possible in a family that talked about the end of life long before they needed to.

“Several times in the journey [in the four years between Cheryl’s diagnosis and death], I would say to her ‘How are you feeling about VSED?’ ” McNally said. “She would say no, I’m good, I’m going to do it. When my time comes, I will do it.”

The couple met when they were 60 and married when they were 70. Sixteen years. That’s all the time they were given. They made the most of their last four years together; traveling, going on adventures and advocating for the right to a dignified death.

Cheryl “was a very outgoing, very joyful person, just an extraordinary personality. She lit up a room,” he said. “She connected with people. She had this uncanny ability, when speaking with people, of making them feel special.”

There were incredibly sad moments, he said, as the disease progressed and her beautiful life started to slip away. Cheryl lost the ability to drive, to play the piano, sometimes she struggled to tell one grandchild from another. In the end, he said, she could do almost nothing for herself without help.

In May, she told her family she was ready.

Cheryl Harms Hauser, who had a smile that could light up a room, died on June 2, 2023. She was 76 years old.

Complete Article ↪HERE↩!

March 6, 2023March 6, 2023

Voluntary stopping eating and drinking

By Martha McClellan

Sometimes conversations with other elders are about how we want our deaths to be. We want them gentle, peaceful, surrounded by loved ones (or not). Many friends of mine have died recently. One had a beautiful and loving end surrounded by family. Another, a sudden heart attack at home with no warning. One, in a hospital with a long, drawn out, excruciating yet courageous, few weeks. Another, from taking his own life – he was ready.

We have accidents, illnesses and our bodies just wear out.

A 2018 Stanford University School of Medicine study found that 80% of us prefer to die at home. However, about three-quarters of older Americans die in nursing homes or hospitals. Leading causes of death for people over age 65 are: 1) heart disease, 2) cancer, and 3) lower respiratory disease. We can see that the hospital scenario is obvious for many of us.

Another choice we have has recently come to my attention. If we get to a place that is unacceptable to us as far as pain, quality of life issues and never-ending suffering, there is something called Voluntary Stopping Eating and Drinking – VSED. It is a way to end suffering in a fairly gentle, peaceful and predictable way. Animals sometimes wander off and die this way.

This choice has been used by terminally ill people throughout modern history. Many on the verge of death come naturally to this process – they no longer want to eat, although they do desire water. One of my friends died recently in this manner and it was all just so instinctive and spontaneous.

I’ve just read “The VSED Handbook,” by Kate Christie. Her mother had early onset Alzheimer’s and was determined not to end up in a memory care facility. They worked together while she was still lucid, along with others in her family, a care team headed by a death doula, a doctor and a lawyer to enable her to go through this process smoothly, and avoid the horrors of late-stage Alzheimer’s.

This book offers an actionable plan emphasizing the importance of planning, palliative care and a network of support. It is a fascinating account of how one person stayed out of a memory care center. Christie also describes what to expect from each stage of the VSED process, and the highlights and challenges, and unexpected gifts of accompanying her dying mother on her final journey.

Some acquaintances have mentioned wanting “something in the closet” in case they need it eventually, depending on how their later years go. VSED seems to be it. While Medical Aid in Dying is the law in Colorado if you have a six-month fatal diagnosis, VSED is not authorized by state statue or by court ruling. But that doesn’t mean it’s illegal.

VSED is legal nationwide. The U.S. Supreme Court, in Cruzan v. Missouri, 1990, said a “competent person would have the right to refuse lifesaving hydration and nutrition.” Therefore, VSED is legal for a person nearing the end of life who has the mental capacity to make their own medical decisions. This shows how important it is to have Advance Directives, and to make them early while we’re competent, so in case something happens, we’re set!

This differs from SED (stopping eating or drinking), which is governed by different laws that authorize withdrawal by health care professionals of fluids and nutrition, authorized by the patient’s advance directives. (CompassionandChoices.org)

It may be more difficult for people who are not terminally ill to receive health care support through the VSED process. However, Hospice assures me that they would support someone midway through the dying process or if they are comatose, with a doctor’s order. They have always been on the compassionate side of the dying and have assisted with many cases similar to this.

More information about all this can be found at CompassionandChoices.org and vsedresources.com.

Shouldn’t elders who feel they’ve lived a completed life have this choice, no matter what the circumstance? And with no criticism, or shame? It’s about dying the same as living – making conscious decisions that work for us. And, having a death with some grace and dignity.

Complete Article ↪HERE↩!

January 21, 2023January 20, 2023

Choosing to halt nourishment: an end-of-life decision

— A palliative-care specialist discusses his role with terminally ill patients who want to hasten death by not eating or drinking.

A hospice nurse provides palliative care to a man with Parkinson’s disease and cancer.

by Brian Donohue

It’s not only patient cases that inform clinicians’ expertise. Geriatrician David Gruenewald took a lesson from his mom, Mary, who at the time was a resolute, capable woman in her late 80’s. As Alzheimer’s encroached conspicuously into her life, she considered hastening her death so as not to burden her children.

“She saw this as a way of maintaining control over the end of her life,” Gruenewald recalled. “We had talked about that for decades, so it was no great surprise that she started talking about possibly ending her life.” The plan his mom considered was to stop eating and drinking.

Gruenewald, a UW Medicine specialist for older adult patients, is medical director of the Palliative Care and Hospice Service at VA Puget Sound Health Care System. Keenly aware of the growing tidal wave of people age 60 and over, he recently delivered a training presentation to dozens of clinicians. Its focus: how to talk with patients who are contemplating voluntarystopping of eating and drinking, “VSED” for short.

picture of David Gruenewald with his mother, Mary — Dr. David Gruenewald with his mom, Mary Matsuda Gruenewald, in 2017. She died in 2021.

As an option for people with decision-making capacity who want to manage their death, VSED has not drawn the same public scrutiny and controversy as medical aid in dying, in which a clinician provides drugs that a patient takes — a practice that’s legal in only 11 U.S. states.

“Workers in palliative care haven’t been much aware of VSED, even though very likely it has been going on for millennia,” said Gruenewald. He added that VSED is an important option for patients expressly because it does not require a doctor’s presence or participation.

“It represents personal autonomy and choice, and healthcare organizations like the American Nurses Association are publicly declaring that VSED is an acceptable, valid approach when palliative care fails to relieve end-of-life suffering,” he said.

When a patient is nearing the end of life or has a terminal condition, and expresses an interest in hastening death, palliative-care providers work to establish that the person has full decision-making capacity that’s not clouded by conditions such as depression or advanced dementia, and has suffering that cannot be adequately relieved by other interventions.

“The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED. In my mother’s case, the reasons for her suffering were key to every part of the conversation that happened after that,” Gruenewald said.

In his presentation, Gruenewald reflected on the experience of a male patient, 67, who had advanced cancer and could not tolerate more chemotherapy. The patient had been admitted to the hospital with pneumonia and voiced a wish to go home and die by self-inflicted gunshot.

“He did not see value in continuing to live and being unable to do the things that formerly gave his life meaning. In talking with him, it was very important that I understood his suffering — the physical, the emotional, interpersonal and spiritual reasons,” Gruenewald said. “And then to see if he was open to considering a less violent path, which turned out to be VSED.

picture of David Gruenewald — “The first thing is I want to understand is why you are asking for us to help you die. I want to fully understand that before we start talking about nuts and bolts of VSED,” said palliative care specialist Dr. David Gruenewald.

“We were able to establish trust, and then to talk through that option and create a plan with supports. It wasn’t quite what he had envisioned, but it was acceptable to him.”

Research indicates that patients who pursue VSED are typically over age 80 and significantly burdened by disease, dependent on others for care, and face a short life expectancy.

Although VSED is not very painful, Gruenewald said he would not recommend it to relieve suffering from severe physical symptoms in the final days of life. The VSED process usually lasts one to two weeks and requires resolve to carry out. Pangs of hunger and thirst typically diminish within a couple of days; dry mouth can be managed with ice chips and over-the-counter products. But the patient will grow progressively weaker, and dehydration may bring agitation and delirium. Physical and emotional support from family members and friends can help get through this phase.

“The way you die has an effect on the people that you leave behind,” Gruenewald said. “And there is evidence that, for many people, VSED can be more peaceful than dying by medical-assisted dying.”

VSED’s lack of immediacy gives the patient time to reminisce over stories and to say goodbye to friends and family. This opens the process and can make it more harmonious for all, Gruenewald said. Another advantage: It gives the patient time to reconsider.

Mary Gruenewald lived another seven years after she initially broached VSED.

“She was in assisted living by then,” her son recalled. “For most of that time, it was at least acceptable, if not high, quality of life. And she was continuing to contribute meaningfully to friends and family in a way that other people really cherished. Those would have been years of life that she would have forgone.”

Complete Article ↪HERE↩!

January 20, 2023January 19, 2023

Notes From a Caregiver

— A husband tries to strike a balance between living in the present and contemplating the future as his wife’s Alzheimer’s disease progresses

“I hate it! I hate it! I hate it!” The tears that flow down her cheeks I am powerless to stop. I hold her hand and respond in the way she has requested, not with words of encouragement but with the truth of her reality.

By David McNally

“Yes, darling, it’s bloody awful,” I say. What must it be like to be losing your mind, to be in a mental fog, desperately seeking to find your way through, only to discover the fog thickens?

My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating.

I keep this at the forefront of my own mind as my wife’s Alzheimer’s progresses, and I am pulled every which way with caregiving duties. Despite needing personal support, the one person who previously was my source of comfort is incapable of giving it to me. And I accept this reality. Her emotional pain is as much as she can handle. My resilience to stay the course must come from other sources.

Caregiving for a spouse with Alzheimer’s is the experience of watching the person you love gradually disappear. My wife’s vibrant personality still shows up, yet the joy from social interactions is dissipating. Not without a fight, mind you. It’s her inability to track a conversation, however, that is becoming too difficult. Her withdrawal is slow but evident.

Our journey is unique in that my wife is choosing to die on her own terms. We are now at the stage where she has put down a marker as to when this will happen — within the next year. Cheryl, my wife, will VSED (Voluntary Stop Eating and Drinking). There will be no memory care unit, no unnecessary suffering for her or her loved ones. When life holds no more joy, and nothing matters anymore, she will begin the process.

Suspension of ‘Normal’ Life

In so many ways, therefore, “normal” life is suspended for me. But then, what is normal at the age of 76? My role as a caregiver is not an aberration; there are millions meeting the needs of loved ones with debilitating, terminal illnesses. What racks one’s own emotions is witnessing the incremental progress of this disease, and the waiting. One is caught in the conundrum of not wanting your wife to suffer but not being ready to let her go.

There is also the guilt associated with looking to the future, a future beyond and without Cheryl. How can I think of such things! Yet wisdom tells me my thoughts are understandable. It is nature’s instinct for survival. Almost twenty years ago, my first wife died of ovarian cancer. I was 56 with potentially many years ahead of me. Now at 76, there are obviously fewer years, but what if there are ten or more? Giving up on life is anathema to me.

This attitude sustains me until it doesn’t. The confidence that I will be okay can be severed unexpectedly. Recently, while cleaning the kitchen, I asked “Alexa” to play Andrea Bocelli. As if to ensure I was fully aware of the grief to come, Bocelli began with, “Time to say goodbye.” I sobbed, as the enormous void soon to be in my life washed over me.

“Then again,” says my incredibly active mind, “who is to say you won’t go first. There is no evidence of illness, and you have a high sense of well-being, but don’t get ahead of yourself. Remember your own debilitating cancer treatment ten years ago. Yes, you were cured but another unpleasant surprise could be on its way.”

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Trying to Make Sense of Caregiving Experience

This is also not Pollyannish or being in denial, but an understanding of how joy and grief can co-exist. Ironically, Cheryl and I laugh a lot. I have the heritage of a British wit and she has a wonderful sense of humor. I don’t believe I have seen anything more beautiful than when her face lights up with a spontaneous smile. She is a magnificent audience of one. That is more than enough applause for me.

This is not a negative thought, but rather a reminder to stay present, to stop waiting, to be awake to the gifts each day brings.

Life is a mystery. That is my current conclusion from my time on this planet. How does one reconcile two wives with terminal illnesses? Railing at God serves no useful purpose. Well-meaning people utter a popular admonition: “God doesn’t give you anything you can’t handle.” My theology is God does not designate illness to one person and not another. That being said, I do believe that within each of us is a spirit that enables the transcendence of enormous difficulties.

Being a reflective person, I endeavor to make sense of this caregiving experience. Several years ago, I wrote a book called “Even Eagles Need a Push.“To quote from my own writing, I stated: “I have been down many paths looking for happiness. But nothing has made more sense and resulted in more contentment and fulfillment than this understanding — the purpose of life is to be a growing, contributing human being.”

There are certainly growth opportunities as a caregiver: patience, surrender, compassion in action, letting go, and acceptance, to name a few. Moreover, contributing to the safety and security of another is as purposeful as it gets. I have no answer to why life has led me to this place and no idea of what the future holds. I am willing, however, each day to step into that mystery.

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December 4, 2022December 4, 2022

A Son’s Decision to Help His Father Die

— Ben Griffith’s dad chose a method to end his life that was controversial — but protected by a Supreme Court ruling

John Griffith in 1989 cradling granddaughter Jordan.

By John Rosengren

1990: The right to refuse medical treatment

Ben Griffith rose before the sun the morning of March 18, 2022, packed his car and began the long drive from his house in Frankfort, Ky., to suburban Kansas City, Mo. The time had come to help his father die.

Months earlier, when John Griffith made clear to his three sons that he would end his life by denying himself food and drink rather than go into an assisted-living facility, his two older sons objected. Only Ben, the youngest at 67, agreed to keep vigil with his 99-year-old father. Now that John’s quality of life had deteriorated to the point where he would rather die than have his misery prolonged with unwanted treatment in assisted living, Ben was heading to his father’s house.

From their many conversations on the subject over the previous decade, Ben knew his father would have chosen the route of assisted suicide if it were legal in Missouri, as it is in 10 states and the District of Columbia. But it wasn’t. In September 2021, in a power-of-attorney directive, John had given his sons the authority, in the event that he was incapacitated, “to direct a health care provider to withhold or withdraw artificially supplied nutrition and hydration (including tube feeding of food and water).” Now, instead of assisted suicide, John had opted to voluntarily stop eating and drinking, a process known in right-to-die circles by the acronym VSED. The process generally takes between seven and 15 days. Because it can be painful, many who opt for it also seek palliative care through hospice services — which is what John Griffith did.

Seated at the kitchen table of his Frankfort home and surrounded by family photos, Ben recounts his father’s experience with life and death. (Ben participated fully in this article; his eldest brother, Tim, did not comment; his elder brother, Jon, offered this comment: “I just know that Ben did a great job representing the family and our experience of going through VSED with Dad. I don’t need to add anything more.”)

There’s a frost threatening that evening, so Ben and his wife, Patricia, have moved inside a dozen or so plants now safely perched along the kitchen counter. Ben, a piano tuner with short gray hair, is tall and lanky like his father, who was 6-foot-4. His words occasionally give way to emotion. His soft blue eyes, also like his father’s, are warm and kind.

John Griffith — born Dec. 12, 1922, in South Carolina, the son of a Methodist minister — was a man of such strong principles and resolve, he bordered on obstinate. Despite widespread public support for the United States’ involvement in World War II, Griffith at 19 opposed war “for any cause whatever” and refused to register for the draft, which he considered a “contradiction of Christian teachings, democratic liberty and individual freedom.” Instead, as he wrote in an essay for the book “A Few Small Candles: War Resisters of World War II Tell Their Stories,” he served 24 months in federal prison.

The influence of a Quaker attorney willing to defend him pro bono sparked John’s conversion to the Religious Society of Friends. After his release from prison, he attended William Penn College, a Quaker institution in Oskaloosa, Iowa, where he met and married Reva Standing. They raised four sons. Griffith spent his working career managing a farmers cooperative. When their oldest son, Chris, was murdered in 1986, Griffith stuck to his pacifist convictions and opposed the death penalty imposed on his son’s killer.

Reva suffered a stroke in 2003 and showed early signs of dementia in the hospital. Despite his belief that it was wrong to end another’s life in war or by capital punishment, John made the decision to honor her wishes and remove his wife of 56 years from life support in what he considered an act of compassion. “It was clear if she came home, there would be a loss of brain function,” Ben says. “He knew one of her biggest fears was living with dementia.”

Neither father nor son could bear watching a loved one suffer unnecessarily — a point driven home by the experience of Ben’s mother-in-law. In 2016, when Patricia’s 93-year-old mother began losing her sight, she moved into an assisted-living facility and eventually a nursing home after going completely blind. “She fell gradually into a shell,” Ben says. “Her existence was getting not very good.”

It was so painful for Ben to watch that he started searching online for ways he could end her life to put her out of her misery and not get arrested. But his father urged him not to do anything that would have negative consequences for his wife and their two adult children. Ben tears up at the telling. “I could have ended her life,” he says. “She suffered — but he said, ‘Don’t do it, Ben.’ ”

Her ordeal seemed to spark something in John. Already into his 90s by then, he began contemplating the end of his own life, which he discussed openly with his sons. Patricia’s mother’s situation “cemented the idea for him: If you go into assisted living, you lose a lot of choices,” Ben says. “If something happens, they call for help. You go to the hospital and they treat you. Same thing if you are in a nursing home. If you’re unresponsive, they are going to treat you.” John made it very clear that he did not want to go into assisted living or a nursing home.

A man as spiritual as he was stubborn, John had meditated daily for years, an hour or so at a time, an essential part of his religious faith and practice. He also swam a mile most every day at the local YMCA. At 90, he set eight state swimming records for nonagenarians on his daily swim, according to Ben. He had decided that once he could no longer swim, life would no longer be worth living and he would begin VSED. “He had identified the red line,” Ben says.

I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By Jane Ridley

Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying — Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

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